I’ve been on ADT for about 4 1/2 years, with the exception of a 3-mo break when I was on a high-T clinical trial. In brief - diagnosed at 46, Gleason 10 with lymph node involved... I’ve pretty much run through the available SOC route, but qualified for immunotherapy Keytruda and that turned things around for me. PSA has been undetectable for 6 months now. I continue to get Keytruda infusions now every 6 weeks.
My question is regarding ADT. I’m not a doctor but if this pembro is so effectively killing the PC, is the ADT still necessary? I don’t see why to continue ADT other than to not rock the boat, while the sailing is smooth. But I’d kind of like to be able to rock the boat again and I want some energy back. Feedback/thoughts??
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Chugach
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So are you saying testosterone interferes with pembroluzimab? I’d like to understand the mechanism. I don’t believe ADT is controlling my cancer. It has not been effective really since year 2. During my HighT Clinical trail. I had a mixed response, some was negatively affected by HighT T, but other areas we’re aggravated. The Pembro is controlling my PC, actually seeking it out and killing it. I thing if there is PC that responds to T then I should draw it out so the pembro can find and kill it. There is another guy on this forum that dropped off ADT after 1 year on pembro, he’s now on year 5- no problems. Sure sample size of 1, but I’m in a small demographic- I don’t think the science is clear on this yet. What do you think?
I don't compare my understanding of this subject to that of TallAllen, but I thought I'd comment anyway. While it's true that ADT improves immune response (by preventing the PCa from growing), it's unclear what would happen if you stopped.
Given your scary clinical numbers, I would understand if your MO advised against a vacation, but I think QoL issues need to enter into the discussion. It's unclear where you stand on the QoL spectrum, other than that you lack energy, but if you're going through anything like what I experienced (pure misery), that needs to be taken into consideration.
I sometimes think about the ADT patients who commit suicide, and the sense of sheer horror that must impact the lives of the families--and even more so, the doctors. I'd be pretty goddamned unhappy with myself if the treatment I had administered caused my patient to pull the trigger.
Amen. QoL doesn't seem to fly into most people's radar.
I'm G4+5, T3b/c, lymph positive. 2 years ago my Mayo docs gave me 3 months before hospitalization.
So I did a version of ADT for 5 months. But I'd look in the mirror and tear up. Boobs, no libido (zero point zero), lost 30+ lbs of muscle in 5 months (most of it in the first 3 weeks).
I stopped ADT and started injecting 400mg/wk of testosterone cypionate. My logic? I discussed with my wife and told her that I'd rather live a year as a man than 30 years as a woman. And Dr. Sam Denmeade at Johns Hopkins, Dr. Bob Leibowitz and others think that BAT or straight high T might be able to induce DNA breaks in some of us.
Well, been 11.5 months and my PSA is 0.05. Had lymph and bone scans two weeks ago. NO lymph node or bone involvement. My SOC onc wasn't surprised given my blood labs. So I'm fairly confident when I say that I'll likely go more than a year! 3 month prediction was passed a long time ago.
Oh almost forgot, libido is back, muscle is back, I'm once again a man. Boobs? Gone.
But this is my story and my definition of QoL is likely different than many. And most of us would probably trade muscle, libido, and booblessness for extra years of life. I'm also religious and I think that helps. I don't fear death.
If anyone thinks about ADT, or BAT, or HighT, or whatever, they should be careful to monitor their PSA (ultrasensitive tests if warranted). See how it works. If my PSA starts going up I will at least consider a few BAT cycles. Then run back to the HighT.
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The blog states ". . . recently the government did a clinical trial using BAT for hormone sensitive prostate cancer and the results were good." I have been unable to track this down--can anyone help?
I also did a high-T clinical trial. It felt great but ended with mixed results. I have a lot of diversity in my PC. Some PC responded positively and some negatively. I had to stop because it was not a comprehensive response- I hope it stays effective for you
Thanks. I'm watching my PSA closely and if it goes up I will be looking at alternatives. Perhaps BAT. Maybe radiation. I'll cross that bridge if and when I come to it.
Castration resistant cancer can have an over expression of the androgen receptor which makes the cancer more "sensitive" to testosterone levels.. Castration resistant does not mean the cancer does not respond to testosterone.
The pembro has cleaned up all the PC. Bone mets are healing and PSA is undetectable for 6 mo now, all pain is gone. If pembro is so effective, why does the adt even matter?
Because the castration resistant cancer is very sensitive to testosterone, even more than castration sensitive cancer. That is why they combine immune and parp inhibitor therapies with ADT.
If you are NED, it’s because of the Pembro, you should not need to be on ADT, which is not curative. Wasn’t your PSA 86 before you started pembro, so obviously it wasn’t the lack of testosterone that generated or aided your immune response?
Yes PSA was 86 pre pembro- undetectable after 2 doses (6 weeks)
I’m in the same boat. Over five years on adt . I’m told “ stay the coarse “! Ive had no visible signs of pc and an undetectable PSA over 4 1/2 years now. I Thank God for this every second . I was in horrible shape for two years . I’m lucky to be alive ..I compare it to sailing in the eye of the hurricane . No body wants to see that eye wall
again.. not me for sure . I Dream of t ..having no t has its own set of special charms, of which I’m sure that you are familiar. T really does equal Energy doesn’t it? I been running purely on fumes for five years . Could the keytruda be adding to your fatigue . Does it have my other side effects? Maybe once you stop it you’ll feel better or more energy? Gleason 10 is high ..
Hi j-o-h-n ,How is the melanoma and prostate cancer doing. I had a doctor at Karmanos cancer in Detroit tell me melanoma and Pca look alike. I just finished four treatments of LU-177 and AC-225. PSA now at 0.1. Onco suggest high T if it comes back and also suggest I go off ADT and live my life another 10 years . Age 80 in April. Guess I just see what happens.
First congrats on going to hit 80.... next + 10 = 90. I'm still fighting the dirty little bastards with Lupron and Casodex....the lung melanoma is sort of just chillin out.
The last Keytruda (monthly) treatment (number 16) for the Lungs was on 01/10/2018.
Thanks for asking about me......
p.s. Just by the surname Karmanos, I could tell Peter is Greek....
My husband has been on ADT for a long time as well. It was explained to us that we must stay on it to block the production of testosterone because testosterone feeds the cancer.. If someone wants to correct me on this I will not be offended...
That's the conventional thought. Google Dr. Sam Denmeade, Dr. Robert Leibowitz, Edward Friedman. They have different views. If you read Huggin's original research you might conclude differently than the conventional medical thought.
But I think it is critical to monitor PSA. I've been on high T for almost exactly one year now and my PSA is 0.018. I never had a PSA "flare" although I was told to expect one. I know though that my testosterone sensitive cancer cells might grow to the point of dominance. At which time I will need to switch things up. I have a few things I'll try before going off the high T though. High T is wonderful. I might be in the PCa "jackpot" camp if you will. Perhaps my genotype/phenotype is reacting well to the T. (BTW I'm Gleason 4+5, T3b/c, lymph node, bladder wall, seminal vesicle. In 12/2018 the doctors at Mayo told me that the cancer would become horrible with 3 months "at the outside")
I appreciate the conversation and I don’t want to gamble with my life. I know everyone keeps telling me this will eventually kill me and everything is palliative. High dose T is working for some, cycling high and low working for others, and ADT working for others. None of this is like a simple recipe to follow without question. Question everything! Test the edges and find the solution. Merck is onto something big with Pembro. It seems very different and I’ve done about everything that is routine SOC. I think pembro could be a CURE. I know that word makes some of you doctors squirm - but that’s the goal, don’t lose sight of it. Immunotherapy just makes intuitive sense to work with your immune system rather than constantly hammering it with chemo for just the goal of keeping any PC knocked down (but not out). And knocking the shit out of your body and mind in the process.
I’d like to understand the mechanism of how ADT improves an immune system response. So how about a ADT/PC biochemistry 101 lesson with a discussion of that role related to the mechanism of a checkpoint inhibitors like pembro?
Did you stop the ADT? I did pembro, then ippi Nivo and then just nivo. We added firmagon In April with no real side effects and I will finish both in September after I have brachytherapy. So far psa undetectable since Early June and my mri in June was very good
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